Hearing the 'R' word for the first time

At times during my treatment for Multiple Myeloma (cancer of the plasma cells in the bone marrow), I wondered if I would live to see my next birthday, never mind living to hear the 'R' word (Remission) but here I am on Friday 26 September 2014 celebrating seven years of remission.

It's a feeling of indescribable joy really to still be here and to be mostly fighting fit. 

I was reading through my 2007 journal last night and this is what was happening seven years ago:

Wednesday 26 September 2007
DAY WARD RESULTS 

A couple of weeks earlier I had a bone marrow biopsy (ouch) to see if my stem cell transplant had worked and to see if the myeloma was gone. I attended the haematology day ward in Tallagh hospital for results. This diary entry was written at the end of that day seven years ago.

I can't describe how in bits I was this morning. I was wide awake at 5.30am walking around the house, pacing up and down. Sleep didn't come to easily last night either. I got very emotional with the kids this morning - I know they didn't really understand why. I was uptight, nervous and it was very difficult to speak any words that made sense.

I had decided to go to the hospital by myself and I know my family members weren't that happy but that's the way I decided to do it today. If it was bad news I would have time to absorb it myself before I had to break the news to anyone else. People knew I was getting my results today so my phone was hopping with texts all morning with good wishes and offers of prayers.

I dropped the kids to school and delayed a bit chatting to people - all the time prolonging the journey to Tallaght Hospital.

When I got to the hospital I had to have my regular bloods done so I headed straight to phlebotomy. Then it was up to haematology. I had a fair idea that some of the nurses knew my results but they couldn't say anything. I had to hear whatever the news was from my consultant Dr Slaby.

In fairness they all knew how nervous I was and they got me into a side room to wait for Dr Slaby almost as soon as they saw me. He arrived and was a bit concerned about the cough I have. I was sitting beside him and I could see the computer screen. I was afraid to look at it as he pulled up my results. My left hand was shaking so much that I had to sit on it to stop it. I glanced at him and then glanced at the screen and lots of numbers and words blurred in front of me but then I thought I saw the words 'no myeloma present in the bone marrow sample'. I thought I was seeing things so I closed my eyes and then he said the words: "We've done it. The Myeloma is gone'. I punched the air with both fists. I wanted to scream the place down but I somehow composed myself. I don't know how or why.

I honestly didn't hear a word he said to me after that - something about maintenance treatment. Then he realised I wasn't hearing him and he said - that's for another day. He said he was concerned about my cough so he insisted I hang around for an Xray. I was bursting to get out of the office and he eventually said that's it and we shook hands.

I ran out into the day ward and ran straight into one of the nurses who had taken care of me and I said 'I'm in remission' and she said 'I know' with a huge smile on her face. She hugged me and realised how badly I was shaking from shock so she put me into a side office and told me to dial 9 for a line out and not to come out or attempt to leave the hospital until I was a bit more settled. She said well done and left with a huge smile on her face.

Pic of me taken in Autumn 2013 

I dialled 9 and called my hubby Bryan but there was no answer. Then I dialled my mother and just as she was about to talk to me I cut her off. I couldn't work my mobile as I was all fingers and thumbs. Bryan rang me back and it was one of the most emotional moments of my life and I could hardly get the words out. I'm in remission I said and started to cry - tears of happiness. He said 'you deserve champagne tonight so that's what we will do'. It was just a moment of amazement I will never forget.

I called other friends and then my work colleagues as I knew people were waiting and there was such joy and love coming at me down the phone lines from family, friends, colleagues. My phone went into overdrive.

I switched the phone off and just sat by myself for a while taking it all in. I did it. I was in remission. All the awfulness, all the suffering and trauma, all the worry - I had done it. I was in remission.

End of diary entry 

I remember leaving the room and meeting the other nurses - they were all thrilled as they had all been willing me to be well. I owe my life to this team of amazing men and women in the day ward in Tallaght. There was no way to ever repay them for giving me my life back but I am determined to try by staying well for as long as I possibly can.

There was such joy in the dayward but we all had to mindful of people around me who were not receiving good news on the day I got my life back. I went off for my Xray and skipped out the door of the hospital. I wanted to stop everyone I met and tell them that I had done it! I am in remission.

I remember heading home down the N7 singing along to the radio. My daughter Emma who was 9 at the time knew that I was getting results on that day. I remember her school bus pulling up and seeing her walking across the green outside our house so I ran over to her and we just stood in the middle of the green hugging after I had told her the news. She was so happy for me.

It was such an incredible moment. At the time I had no idea that my neighbour was watching - she knew I was getting results that day and she dropped in a card later that day telling me that she had stood at her window watching this beautiful moment between mother and daughter unfold before her eyes. She said it was impossible not to cry!

That was seven year's ago today and there have been so many more beautiful moments that have unfolded in my life and I so grateful for every one of them. 

We all take things in our lives for granted - time being one of them.

I've watched my daughter grow into the most wonderful 17 year old girl. 

I've watched my baby boy grow into a charming and witty 10 year old. 

I'm getting to grow older with my hubby of 19 years. 

Time is the thing I find myself most grateful for. It's wonderful. 

Here's to continuing to kick cancer's butt and to savouring time. 

Brenda 

xxx

The Sins of the Children by Emma Tobin

The mute, mothball shrieks of children dying under mother’s hands
And the fractal bursts of fractured light that hit
As the world tumbles over itself, leaving vague moments...
Like fingernails between the stones

While we, like disapproving books on dusty shelves
Clasp coffee cups against the precious beating of our hearts
Toss cynicism between one another, each drop of sweat a privilege
Each breath a human right

Stuffed straw mouths and shining hair
Religious freedom weighs more than dead children
Leaving corpses littered like cigarettes
Colours in a twisted dream of heaven

Matchstick ribs jutting, but we stood on the moon
How fragile have we made our one,
short and common life? How easily
our complacency is bought.

And in the dull light of big- mooned skies
Ragged lines of blood stutter down, rough
touches underneath a fluorescent fire. Severed
heads belching, toddlers left for flies.

In empty houses seashells wait for pudgy fingers
now bludgeoned shades of navy blue. And
our tots writhe on the warehouse floor, unable
to comprehend a world without Lego.

These shells will not creak in a gruff wind
Stretched lopsided over an imagined territory
An imagined safety, an imagined,
tender world.


Copyright: Emma Tobin (age 17)
September 2014

Being a Teenager

This is a guest post by my 17 year old daughter Emma 

"Among other things, you'll find that you're not the first person who was ever confused and frightened and even sickened by human behaviour. You're by no means alone on that score, you'll be excited and stimulated to know. Many, many men have been just as troubled morally and spiritually as you are right now. Happily, some of them kept records of their troubles. You'll learn from them—if you want to. Just as someday, if you have something to offer, someone will learn something from you. It's a beautiful reciprocal arrangement. And it isn't education. It's history. It's poetry."

– J.D Salinger (The Catcher in the Rye)

When I stepped over the precipice of innocence into adolescence, into the supposedly terrific and terrifying teenage years, during which (if one believes ‘Little MissSunshine’) I was to acquire all the suffering that would shape whoever I turned out to be, I had certain preconceptions that have proven mostly, wildly inaccurate.

Firstly, I believed that I would become cool. If anything, I have become less cool, enmeshed in the claws of Battlestar Galactica and Star Trek and Doctor Who. Secondly, I believed that I would become corrosive and irrational. Instead, I maintain fluid diplomatic relations with my family. Thirdly, I believed that by the end of it I would know precisely who I was and what I wanted to do with my life. Of all my widely inaccurate expectations, that was pretty high on the delusional scale.

At some point in the past two years, I reached the terrifying conclusion that I have one life; one chance to do everything right, and it was absolutely terrifying. My teenage years haven’t given me one iota of wisdom about myself. I could tell you about the Cold War and The Beats Generation of artists and writers in New York City, but when I’m asked to say two things about myself I am rendered uncharacteristically speechless. I think that most people my age feel more or less the same way, and while it’s comforting not to be utterly alone, it doesn’t exactly help.

I believe that there’s a myth about adolescence as being uncoordinated and illiterate when it is anything but that. It’s during these years that we must make the choices that determine the rest of our lives, and that’s a lot of pressure to put on sixteen-year old shoulders. It’s a swirly whirly vortex of different ideas. We struggle with religion, with consensus, with sexuality, with the very foundations of our moral system, and yet at the same time we’re expected to learn things about maths and geography.

I’ve catapulted between cynicism and idealism and then challenged the basis of these categorisations; I’ve changed my mind about what I believe in dozens of times. I’ve wondered about God and been more than a little horrified by the crimesof those who came before me. I’ve read a thousand books; I’ve thought a thousand different and contradictory things. Honestly, I feel like an old woman already.

I’ve also memorised Pythagoras’s Theorem, learned how to motivate imaginary employees, and sat bewildered by the difference between diverging and converging plate boundaries. I am a person constantly in flux, but while I’m at it why shouldn’t I decide what to do with the rest of my one single precious life?

Being a teenager is hard. It’s one of the most difficult thingyou’ll ever go through. It’s so hard that some people don’t make it to the other side. All the same, it’s a brilliant time. It’s like when you’re on a rollercoaster and you’re slowly edging up to this massive height and your stomach is sick, you feel like you’re going to fall out and smash into a million pieces as people look on while eating peanuts and candyfloss. But, once you get to the top there’s a relieved, exhilarated sort of excitement slamming your heart against your chest. In the end, the triumph of reaching that giddy height is worth the slow and painful ascent.

I suppose that being young is simultaneously the worst and best fate imaginable. You’ll look back with nostalgia to your legging-wearing, Adidas-sporting days, but there isn’t enough money in the Western economy to persuade you to do it over. You’ll be terrified that, no matter how badly you did it the first time around, you might mess everything up even more spectacularly if given a second chance.

Even if I don’t reckon I’ll ever settle definitively on the one thing I want to spend my life doing, by the end of my teenage years I think I’ll have an idea, a murky inkling I can somehow grope my way to. It isn’t anything as concrete as a career name, but a dim sense of something indescribable. I think that one day I’ll take a blind step down the road of my life and it’ll feel like I’m finally headed in the right direction. It’s as simple and as complicated as that.

 

Copyright:  Emma Tobin 

April 2014